Is Lou Gehrig's Disease Inherited?

Jun 04, 2009 - 4 comments

Lou Gehrig's Disease (amyotrophic lateral sclerosis or ALS) can run in families with more than one affected family member, called familial ALS (FALS), but typically strikes at random with no family history, called sporadic ALS (SALS). FALS and SALS are clinically similar. However, most people with SALS have symptom onset at about 56 years old, while most people with FALS have symptom onset at about 46 years old.

Sporadic ALS is most likely multifactorial condition, which means that it involves a combination of genetic, lifestyle and environmental factors.

Familial ALS makes up about 10% of total cases of ALS. Different types of FALS are distinguished by their genetic cause, the age at which symptoms began (age of onset), and disease progression (slow or fast). Although 9 types of ALS have currently been identified, only a small percentage of cases have actual known genes and established patterns (modes) of inheritance. As of yet, researchers have only adequately identified and classified genetic mutations that cause ALS types 1, 2, 4, and 8.

For more information on the symptoms of ALS and genetic components of ALS, visit: http://AccessDNA.com/condition/Amyotrophic_Lateral_Sclerosis/35

My brother was 45 when he began falling, and experiencing muscle weakness. He progressed rapidly to the point of being parylized up to his neck. He needs to be fed, bathed and put to bed. Only his hands work a little bit now. I know he probably doesn't have much time. I have 3 natural siblings by my parents. 2 females (aged 58 and 55)
have peripehral neuropathy in various degrees, but are able to function well. I (61) have no symptoms other than benign tremors, not sure if this is even related. Absolutely no family history of this at all. (see comments at bottom)
My father had a daughter out of wedlock by another woman and that half sister also has the periferal neuropathy, ALS. Her son (19)recently collapsed in boot camp and shows all the symptoms of Lou Gherigs disease. Stiff gait, weak muscles.

My brother had gone to Mayo clinic in Scottsdale AZ and it took 2 years for them to even come to any kind of diagnosis. Eventually they said he had extreme muscular inflammation. Using his muscles makes them weak and degenerates them, unlike my sister, who benefits from exercise. Mayo Clinic doctor sent my brother to Tucson to a doctor whom he said was interested in doing research on my family. When my brother arrived at this doctor's office, the doctor very ungraciously got angry and started ranting about why Mayo kept sending him patients under this circumstance. He was rude and offered no help and was not interested in working with us.

My theory on this is as follows: My father, now 81, was stationed at the San Diego Navel station on Coronado Island. All of these sailors recieved immunizations. (I believe that the immunization carried the host for what would become Lou Gherigs.) These sailors arrived on Saipan Tinian islands where they were stationed. Although my father says all the women on the island were in concentration camps, I believe there had to be some out of the camps. I saw photos of my dad and his buddies with women on the island. If these sailors had relations with any women on the island, somehow, I think that it migrated to surrounding islands. In my research, I found that the nearby island of Guam has 100 times more incidence of Lou Gherig's or ALS than other countries. I find it very possible that whatever migrated to their island, could have then thrived in a tropical atmosphere, or close breeding in the island caused it to explode. I think my theory holds a bit of weight. Anyone interested in persueing it?
Please email me at ample-annie@juno.com

My name is Peter J. Campbell, 53, resident of Niagara Falls Canada. My Ftaher, who studied under the Mayo's beloved Director, Dr. Harry Seldon, practised medicine here for 27 years, until he worked himself to death via a massive coronary at the age of 56. He left our Mother a widow at 47, with six children (3 of each) to get off to University. She returned to her pre-marriage profession as an R.N. For us, childhood was happy and healthy. Then my Mother lost her sister to ALS in the late sixties. Her sister had a son and a daughter, who both succumbed to the terrible disease, a couple of years apart. A decade later, my Mother lost her only brother to ALS. On my Father's side, there was never any recorded case of ALS.
And then it hit our immediate family. I was living in Manhattan when my oldest sister was diagnosed in 1998. I moved up to Canada to be near to her. She died in 2001. My oldest brother David, my idol, who had just been remarried in July of 2008, was diagnosed about 10 months ago. I visited him yesterday. He had been a sturdy athlete, 6'1" and 210 lbs., like me, and was a world class yachtsman. He was 59 at the time. Now, he can just get by in a very strong walker, sometimes needing a little guidance. He is down to 140 lbs. which has distorted his facial features, and he is rapidly losing the power of speech. He has a Dynavox, but it wasn't functioning yesterday, and communications were very difficult.
This period is particularly heart-breaking for me, as I have watched my sister's degenerative course and I recognize the stages along the inevitable path to death. I can feel myself mourning in advance.
Now we are four remaining siblings, all younger than my sister or brother afflicted, and there are eight neices and nephews all at Universities. At some level of consciousness, I think we are each frightened, and constantly on the look-out for early tell-tale symptoms of ALS.

My immediate question is this. My partner (36 and robustly healthy) wants to have my child, and I would love to. There are other genes in our family which are extraordinary, like high intelligence. But I don't know if it is right to "lob" my genetic material into the future. I don't want my legacy to be a child of mine who must suffer this horrible, cruel fate. So, is there a way to screen for the genetic defect before any symptoms appear? If someone can help me with this dilemma, I can be reached at . I would be most grateful.

Beyond my family, I must say that it pains me that there seems to be so little awareness of the Disease in the general public, in the community at large. What research (and where) is being done? Is there any hope in the pipeline?
Other "high profile" diseases seem to be widely publicized in order to increase understanding, empathy, and compassion for the afflicted. They also serve to raise essential funds for research. I have yet to see ALS even mentioned once in any form of media. And never on one of the mega-popular TV talk shows with millions of viewers which can form public opinion, on a daily basis. What fund-raising events exist in Canada, and how successful are they?
Could you please try to answer some of these direct queries and send me any literature, even pamphlets, designed to call attention to Lou Gehrig's Disease? And if there is an on-line information service, a newsletter, could I subscribe to it? I have been to Sunnybrook in Toronto, for a briefing on ALS, but all my questions were answered with an unrelenting "NO". I believe that I have erased most of the painful experience from my memory banks.
The Campbell family has been hit particularly badly, and yet, my greatest concerns are about the future.

The thing for people to realize is that, in addtion to genes, there are many other things that run in families. These things include lifestyle choices, beliefs, attitudes, religion and ways of handling emotional issues.

So a disease running in a family is not something that has to continue.

By changing the other things, one can change what goes on with the health of family members.

For instance, self repressive ways of dealing with emotional trauma contribute to the creation of als. So by learning healthier ways of dealing with emotional issues, one can start to prevent the development of als.

In general, the development of a condition like als is the logical outcome of the repeated use of certain approaches to living. By learning how that works and taking optimal steps to make changes, one can stay healthy.

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